In Italy, rising dementia rates and an aging population expose the painful consequences of an absent state

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“My mother has always been an active woman. She was a teacher, principal and then mayor of her small town. She was the first to notice that something was wrong. She was halfway through a newspaper article when she realized she had already forgotten the beginning.

This is how Maria Paola Mattolini describes the tragic moment when her 70-year-old mother Giuditta realized that her brain wasn’t working like it used to. After some tests, a neurologist suspected Alzheimer’s-type dementia but could not diagnose it with certainty because the disease was still in its early stages. A few years later, the diagnosis was confirmed. “The doctor told us right away that there was no way to reverse the trend, but she told us what we could do to slow the decline and allow my mother to live as peacefully as possible. “

Ten years have passed since that day. Five years ago, Maria Paola’s parents moved with her to Milan because her father could no longer take care of her mother alone. “Over time, I realized that it is not true that people with senile dementia become like children,” says Maria Paola. “They obviously lose cognitive abilities but they remain rooted in their experience, even if they are unable to fully understand it. We must take advantage of this experience so that the person feels valued and not completely lost. But the further it goes, the more difficult it becomes to appeal to their identity.

The latest report from Alzheimer Europe (Dementia in Europe Yearbook 2019) estimates that around 1.3 million people in Italy suffer from dementia, the most common cause of which is Alzheimer’s disease (50-60% of cases). The prevalence of these diseases increases sharply with age.

Italy already has the highest median age (46.7 years) and the highest proportion of elderly people (22.8% of the country’s population is over 65) in Europe. Taking into account current aging trends, the report estimates that more than 2.2 million people in Italy will be affected by dementia in 2050, nearly double the current number. Looking at Europe as a whole, the report predicts that the disease will affect around 18.8 million people by 2050, or 3% of the population.

“These are very frightening figures, especially when you know that for each patient with this disease, an entire family is affected,” says Patrizia Spadin, president of the Associazione Italiana Malattia di Alzheimer (AIMA). “Millions and millions of people bear the enormous emotional, psychological and economic burden of caring for people with dementia on a daily basis.”

Patients and caregivers left behind

Faced with such alarming figures, Italy has done far too little. “Patients and families face multiple challenges. There’s no real care, there aren’t enough services for patients, and there’s no information about what services are available,” Spadin says. “Centres specializing in dementia are few in number and poorly distributed across the country. It often takes 12 to 14 months from the time the first symptoms are reported before a diagnosis is made. At this stage, the specialized centers can do little more than prescribe medication and carry out routine checks every four or six months. »

The associations denounce the absence of a national strategy to fight against the disease. “We have 20 different regional systems. A person who falls ill in Sicily will receive less help than in Lombardy. This is unacceptable. Once families have started the long and complicated process of diagnosis, they have to bear the burden of the disease on their own,” says Mario Possenti, Secretary General of the Federazione Alzheimer Italia.

Italy’s National Dementia Plan, a public health document that provides strategic guidance to improve care in the dementia sector, was first adopted in 2014 but languished for years without funding. Finally, at the end of 2020, 15 million euros were allocated to the plan over a period of three years. “We finally have some good news, but it still pales in comparison to the enormous costs of the disease,” Possenti says.

A 2016 study conducted by AIMA and Censis (the socio-economic research organization) estimates the average annual cost of a patient with dementia at around €70,000.

The estimate combines direct costs (such as drugs and outpatient services) and indirect costs (such as lost income and informal help). The Italian national health system covers only a fraction of these expenses: 30% of direct costs, which themselves represent 25% of total costs. The indirect costs, which represent three-quarters of the total, are borne entirely by the families, who end up paying more than 90% of the cost of the disease.

Maria Paola receives just five hours of occupational therapy a week for her mother and one hour of psychological support for her family – and she lives in Lombardy, where dementia-related expenses are relatively high compared to other regions.

“Fortunately, my parents have a pension that allows us to pay for home care,” she says. “This disease has a very high economic cost for families because the person can never be left alone. Sometimes, even at first, they turn on the gas for no reason, or they confuse the oil with the soap. But how do people who cannot afford this support cope? It is unacceptable that low-income families suffer this tragedy without being granted a moment’s respite.

“It’s as if helping these people isn’t a matter for the national health system,” says AIMA’s Spadin. “Without volunteering and third-party helpers, there wouldn’t be a whole range of psychosocial services, most of which cost money. And a lack of state oversight opens the door to all sorts of scams. People invent fake therapies and take advantage of situations where families have been abandoned and are suffering.

Unlike many European countries, Italy provides very little support for carers, many of whom rely on associations for help. “We received a large donation and contacted the social services of the neighborhoods of Rome to identify the most needy families in order to provide them with support”, explains Luisa Bartolini, president of the Alzheimer’s association Uniti Roma. “The Lazio region has passed some laws for caregivers. Things are starting to move in the right direction but the regions are moving forward in a haphazard fashion.

A heavy burden for women

In the absence of coordinated support structures, the devastating burden of dementia is borne primarily by women. The reasons for this are twofold, as Possenti explains: “Since women have a greater life expectancy, they statistically suffer more from dementia. […]. At the same time, in a country as deeply chauvinistic as Italy, the burden of care almost always falls on women, who are often forced to give up their jobs, further exacerbating gender inequalities in our country. With only 50 percent of working women, Italy ranks next to last in Europe (68 percent on average), ahead of Greece alone (47 percent).

The pandemic has only made things worse for people with dementia and their families. According to estimates by the Italian National Institute of Health, 20% of Covid-19 deaths have occurred in people with dementia. This was largely due to difficulties in adhering to hygiene measures and the fact that most patients were housed in residential facilities where transmission levels were high. “Those who survived were isolated for two years. Interaction with loved ones is essential to slow the progression of the disease,” says Possenti. “The pandemic has decimated an already vulnerable population, not only by the disease itself but above all by the lack of targeted social policies,” says AIMA’s Spadin.

“The hardest thing is that people with dementia are less and less able to make themselves understood. My mother had a stomach ache but she couldn’t explain it,” says Maria Paola. “There are no specialized medical centers for people who can no longer express themselves. It’s painful because it shows how, from a certain point of view, patients and families are completely abandoned. It’s up to us to manage everything on our own, to take on responsibilities that we shouldn’t have. But there is no one else to turn to in such cases.

Dementia is the seventh leading cause of death worldwide and one of the leading causes of disability and dependency among older people. The latest report published by the World Health Organization (WHO) shows the urgency of stepping up efforts globally.

The number of patients continues to grow: currently estimated at 55 million, it should increase to 140 million by 2050. But as the report points out, only a quarter of the countries in the world have put in place a plan to fight against the disease. dementia, half of which are in Europe. The economic and social costs of dementia are estimated at US$1.3 trillion and are expected to double by 2030.

“In order to provide effective patient care, we need a structured national network that brings together primary care physicians, diagnostic centers, occupational therapists and associations,” explains Possenti. “It would be useful for society as a whole and for the health system, which would have official data to monitor and improve the services available.”

“The state needs to understand that we are talking about a serious disease with a devastating social impact,” Spadin said. “So many families are on the brink, exhausted from years of assistance. Caregivers lose their economic resources and even their health. We need to find solutions that meet their needs, because what we have now is a ticking time bomb.

This article has been translated from French.

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